Advocacy

ALS Canada is working hard to improve the quality of life for people living with ALS. That means advocating on their behalf – and their family caregivers too – as they often experience financial hardship in the wake of this disease. Each of the provincial societies is working on bringing that message to our provincial governments. We hope to tie in this initiative with ALS Awareness Month in June.

CLICK HERE to read more about the events that took place at the ALS Canada Hill Day on
November 18, 2013.

ALS is a Costly Disease

ALS is a very costly disease (it can cost anywhere between $200,000 and $400,000 over the course of the disease for equipment and care) and caring for a loved one has a huge financial impact on families across the country. For ALS families, every little bit counts. The new family caregivers’ tax credit is a first step towards supporting those who care for their loved ones living with diseases such as ALS – 24/7 – at home. However, much more needs to be done.

Meeting the needs of people living with ALS and their families requires a comprehensive approach by the federal government. ALS Canada urges the federal government to take leadership on the Compassionate Care Benefit.

Background on the Compassionate Care Benefit (CCB)

In January 2004, the federal government launched the Compassionate Care Benefit Program under the Employment Insurance (EI) Program, which is managed under the Ministry of Human Resources and Skills Development Canada. In 2006, EI compassionate legislation was amended to provide benefits to anyone the terminally ill person regarded as like-family. (Treasury Board of Canada web site: http://www.tbs-sct.gc.ca/hr-rh/in-ai/2006/0918-eng.asp)

Compassionate care benefits are Employment Insurance (EI) benefits paid to employed caregivers who have to be away from work temporarily to provide care or support to a family member who is gravely ill and who has a significant risk of death within 26 weeks (six months). If they are eligible, caregivers are entitled to take up to eight weeks in leave from work and receive partial income replacement for six weeks. (Service Canada web site: http://www.servicecanada.gc.ca/eng/ei/types/compassionate_care.shtml)

What are the shortcomings of the CCB?

Claimants need to obtain a medical certificate from a doctor indicating that the family member is gravely ill with a significant risk of death in the next 26 weeks (six months). There is a need for one or more family members to provide the ill family member with care or support.

The application process is not realistic given the nature and course diseases such as ALS.

The requirement of a two-week unpaid waiting period.

The inadequate amount of time the leave provides (only six weeks paid).

The inadequate financial compensation the CCB offers.

Very few people actually qualify for the benefit (either self-employed or not currently working).

Recommendations

ALS Canada recommends that the federal government take the following steps to remedy support for caregivers:

Increase the benefit period to a maximum of 52 weeks within the last year of life (as currently exists for maternity leave). Parental leave offers one year of benefits at the beginning of life – the same should apply at the end-of-life.

Build more flexibility into the program, such as allowing partial weeks over a longer period, rather than blocks of weeks at one time.

Revise eligibility criteria: change the terminology for people eligible for benefits from “significant risk of death” to “significant need of caregiving because of a fatal illness.” Doctors cannot give an exact date of death and the toll on the caregiver is extremely heavy throughout the course of ALS.

Create a companion program to the Compassionate Care Benefit that is not based on employment. An example could be a program such as CPP that people can pay into, whether they are self-employed, part-time employed, unemployed or retired, so that they could draw on it when/if they need income to sustain them through a period of caregiving for a loved one.

Currently, only family members can use/take the Compassionate Care Benefit. Because of the devastating and progressive nature of ALS, the care needs to be shouldered by more than one person. We propose that the care be provided by family and friends and that the benefits be split amongst them over a 52-week period.

Dr. Neil Cashman, Professor and Canada Research Chair Department of Medicine (Neurology) University of British Columbia says, “ALS is a cruel disease on every level, including the impersonal level of finance. The disease predominantly affects families just as they are beginning to see their way clear with mortgages, children’s education, and other financial burdens. The loss of a breadwinner to disability and death is intensified by the dreadful choice that a caregiver must make: should I help my beloved during the last year, or continue to work to support us all? The availability of a Compassionate Care Benefit (that extends benefits from six weeks to 52 weeks) during this period would be a great comfort to these families.”

Caregiver Policies in Manitoba and Nova Scotia

Nova Scotia

The Caregiver Benefit Program, formerly Caregiver Allowance, was established by the government of Nova Scotia to recognize the important role and efforts of caregivers in assisting their loved ones and friends.

The program was set up to assist low income care recipients who have a high level of disability or impairment as determined by a home care assessment. If the caregiver and care recipient both qualify for the program, the caregiver will receive $400 per month.

The following are the criteria for eligibility as determined by a Continuing Care Coordinator.

The person receiving care must:

Be 19 years of age or older;

Be a Nova Scotia resident;

Be in a care relationship with a caregiver;

Have a net annual income of $18,785 or less, if single, or a total net household income of $35,570 or less; and

Have a care assessment completed by a Continuing Care Coordinator indicating a very high level of impairment or disability requiring significant care over time.

The caregiver must:

Be 19 years or older;

Be a Nova Scotia resident;

Be in a regular, ongoing care giving relationship with the person receiving care, providing 20 or more hours of assistant per week;

Not already be receiving payment to provide assistance to the person whom she/he is providing care; and

Be willing to sign an agreement which defines the terms and conditions for receiving the Caregiver Benefit.

The Caregiver Benefit may continue for up to one month even in the event of an interruption, such as, but not limited to, the care recipient no longer requires care assistance because of hospital or respite bed admission, or the caregiver is unavailable because of sickness or vacation. The caregiver recipient must notify the Continuing Care if interruption of providing care will exceed 30 consecutive days.

The Caregiver Benefit will be discontinued because of the following:

The caregiver is no longer capable or available to provide assistance.

The caregiver is no longer eligible.

There is an interruption of providing care for more than 30 consecutive days.

The qualified care recipient is admitted to a long term care facility.

The qualified care recipient no longer meets the program’s income criteria.

Primary caregivers for family members and others are now eligible for a refundable $1,275 tax credit in Manitoba. The Primary Caregiver Tax Credit was established to recognize the support caregivers provide those in need of assistance and care. Before receiving the tax credit, people in need of care must be assessed at Level 2 or higher under the Manitoba Home Care Program guidelines. The assessment is based on how much care is required for tasks, such as bathing, dressing, eating meals, mobility, and receiving medical care. Level 1 requires minimal care, thus is not eligible.

The eligibility criteria are the following:

The primary caregiver must be a resident of Manitoba;

The primary caregiver is identified by the person receiving care; and

The primary caregiver is not paid to provide care.

The Primary Caregiver Tax Credit came into effect in January 1, 2009, revised in 2011. Caregivers have to complete a three-month qualifying period. Caregivers may earn the credit for up to three care recipients at any time, thus earning a maximum credit of $3,825. This credit is not based on income, and is fully refundable.

The new Family Caregiver Tax Credit, which came into effect on January 1, allows family caregivers taking care of an ill family member to claim an enhanced amount for a dependant under one of the existing dependency-related tax credits. The new tax credit could translate into as much as $300 per family for 2012.

The “How To” Health Guide (PDF) was developed by the Health Charities Coalition of Canada to help Canadians understand and navigate the health-care system.

Speaking for Ourselves – Provides information on how to run a successful advocacy program. Link to the guide

Global Television airs a three-part series on compassionate care

Compassionate Care in Canada

Reporter Shirlee Engel interviewed the Garrah family in St. Catharines, ON, in the first of the three-part series that aired on Global Television:

Casey Garrah was diagnosed with ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease) back in the fall. Just months before the 40-year-old’s symptoms appeared, he was laid off his job, so he has no salary or benefits.

His wife Cathy has looked into applying for CCB, but she doesn’t qualify, one of the reasons being she works part-time at a law firm. Her job status also means she has no benefits or sick leave.

Eventually, Casey’s disease will progress – making walking, eating and even breathing difficult. Cathy will then become her husband’s caregiver around the clock.

She says, “I've always told him: ‘We’re best friends first.’ And I’m going to take care of my best friend.”

With two kids to care for, the financial burden has been tough on the St. Catharines, Ont. family. They lost their house just a few days before Christmas, and were forced to move in with Cathy’s parents.

CCB currently only offers six weeks of compassionate leave at partial pay. Cathy says, “Six weeks for someone who’s dying? There’s no compassion in that.”

The family is hoping changes are on the way before Casey’s health worsens.

David Tilson, Member of Parliament for Dufferin-Caledon, reintroduced his Private Member’s Bill that would designate June as Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig’s disease) Month. Click here to read the press release

ALS and the Military

As demonstrated through several academic studies, veterans are more likely to develop ALS than the general population and so ALS Canada made it their mission to ensure that veterans, who have selflessly served their country, are provided for when they need their country’s help.

A huge battle was won on October 15, 2010, when the Honourable Jean-Pierre Blackburn, then-Minister of Veterans Affairs and State (Agriculture) announced that veterans living with ALS would obtain more rapid access to disability benefits and home-care support. This victory was the culmination of many months of campaigning by ALS Canada on behalf of our Canadian veterans, who, thanks to our efforts, now have one less barrier to face.

We at ALS Canada are very proud of the role we played in achieving this significant victory for our veterans.